Support Networks for Families Affected by Angelman Syndrome

Families affected by Angelman syndrome may struggle with stress and feelings of isolation. It can feel like no one truly understands what they are going through, and it can be hard to connect with others. Having a good support network can help.

What is a support network?

A support network is made up of people who support you and your family. These are the people you can call when you have good news to share, when you need help, or when you just want to talk about what’s going on in your life.

We naturally form support networks with friends, family, and peers. Support can be formalized as part of a support group or a religious or professional organization, or they may be more casual, such as a group of friends you meet for coffee.

How do support groups help?

Research has shown that having a good support network improves the ability to cope with stressful situations, as well as helping alleviate emotional distress. There also are physiological and psychological benefits to having a good support network, including better cardiovascular health.

Where can I find a support network?

The Angelman Syndrome News website is a great place to start. We publish articles regularly about new treatments and research. The website also can be a great place to connect with other families affected by Angelman syndrome. In addition, the challenges of day-to-day life are chronicled in “Raising an Angel,” a column by Mary Kay who has a daughter with Angelman syndrome, and “A Rare Mind,” a column by Terry Jo Bichell, who has a son with Angelman syndrome.

It may be difficult to build a social support network when you are stressed. If you need help immediately and don’t have the time to build a social support network, a more formal support group may be the best place to start.

The following organizations offer information about treatment options and ongoing research, but also have networks for connecting with other families that may be in a similar situation:

• Angelman Syndrome Foundation
• Canadian Angelman Syndrome Society
• Foundation for Angelman Syndrome Therapeutics
• National Organization for Rare Disorders

Last updated: Jan. 28, 2020

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Angelman Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.